Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.

Thursday, July 29, 2010

The sweet little boy I wrote about last week has a family! A paper-ready family was found for Monroe and God willing, he should be home by Christmas! Now, only about two million more to go!

Sweet baby M has pneumonia (since Tuesday). E also now has a high fever and runny nose, too. I’d like to personally thank the idiotic parents who insist upon bringing their sick kids to daycare jacked up on Ibuprofen and Tylenol to disguise their fevers so they can share their funky diseases with all the healthy children. Our daycare, like most others, has specific rules related to illnesses. As long as there is no fever and only one symptom they don’t send the kids home. M is kept “secluded” to some extent, but I suspect a lack of good hygiene on the part of the teachers is responsible for the transfer of germs. FRUSTRATING!! It also saddens me that parents don’t care enough about their kids to keep them home when they are ill so they can heal. I digress…..

I saw a quote a couple of weeks back – actually when Kevin and I were out on our date. I saw it on a coffee mug or something and when I read it, I felt like someone had just summed up my life in one, short sentence. It said: “Life is all about how you handle Plan B.” For some strange reason, saying it out loud brings an eerie sense of peace to me. Maybe it sounds silly, but it gives me courage to think about doing things that I would not otherwise consider and reminds me of all the things I’ve already done that were “not according to plan.”

When I look back on my plans for my life – none of them included living in a tiny community of 700 people, working full-time in a lab, and adopting three special needs children of different races. My plans most certainly did not involve driving a minivan! I recall picturing myself married, with two kids who looked just like me, living in a moderately sized city, driving a sporty SUV, taking vacations and wearing semi-stylish clothes. What I don’t recall is imagining myself as happy or as satisfied as I am right now. Every day I wake up amazed that I am Mom to the greatest kids in the world, married to the most wonderful husband in the world. I don’t have any desire for that sporty, new SUV or new clothes. I don’t miss going on big vacations. I love, and I do mean LOVE our home and our sleepy, little town. Don’t get me wrong, it’s not all roses and sunshine, but for the most part, I am truly happy. There is one area of my life that plagues me; one thing I desperately want to change – I (we) feel courageous enough to set out to do it, now. We pray we’ll receive non-judgmental, unconditional support from those closest to us, but know that even if we don’t, we will be doing what’s best for the little people that are most important to us. In the coming months, there is likely going to be some big changes for the Fenske Family. I’m a little scared, a little uncertain and at the same time, quite excited. Stay tuned………………

Friday, July 23, 2010

I beg you to go to this link and read about this incredible little boy. If you or someone you know is considering special needs adoption, this little guy may just be the child you're looking for. His situation is critically urgent! Please post to your blogs - perhaps by getting the word out, we can find this little guy's family.

Tuesday, July 20, 2010

One year ago today a great fighter came into this world at 25 weeks gestation weighing a hefty 1lb 7oz, measuring a whopping 14in long. Little did anyone know she'd not only survive her birth, but survive resuscitation, 3 1/2 months on a ventilator, 3 intraventricular hemorrhages, 14 neurosurgeries, sepsis, 2 throat surgeries, catastrophic epilepsy, cerebral palsy, and cortical vision impairment. She was born with a future so uncertain, in fragile health and with no family to love her. No one could've imagined that tiny person would grow into such a strong (19 lbs 26 1/2 in), loving, amazingly spirited little girl. I am so in awe of her every day. I am in awe of all she's been through and all she continues to go through. I am in awe of her smile and her giggle. I'm in awe of how hard she works and how determined she is to get her uncooperative little body to do the things she wants it to do. Mostly I am SO GRATEFUL that she found us. I cannot imagine my life or our family without her.

Monday, July 19, 2010

Date night was AWESOME! It was so nice, and to be honest, very strange to be out without children. I took Kevin HERE and it was really cool. The food was incredible and the show was great!

Yesterday we spent the whole day together as a family. We looked at 8 houses and realized that apparently no one cares about their homes like we do. So many of them were filthy and in disrepair. I just don't get it. Most of them didn't have great yards, either. We are so spoiled where we live right now. It made me want to find a way to make our totally unaccessible, raised ranch accessible for M as she grows and nix the idea of moving altogether.

When we got home we got the kids in their swimsuits and spent some time in the pool. I even waterproofed M's central line site with multiple layers of Tegaderm and Aquagard and put her in the little floating boat we bought her. It took some finagling to get her propped up comfortably, but once she was in there, she loved it. She moved and kicked her legs so smoothly and easily under the water. I definitely think we'll be spending some time at "water therapy" - it has to feel great on her joints and muscles. We played outside a bit, grilled out and had a great Sunday evening.

Thursday, July 15, 2010

It is a well known fact that, on average, 50% of marriages these days end in divorce. That is a HUGE number, I think. It is, however, a little known fact that 85-90% of marriages involving the raising of a child with special needs end in divorce. 85-90%! That statistic is staggering! We've been told in the past related to surviving infertility and making it through difficult/lengthy adoption processes – “this will make or break your marriage.” We’ve survived both-quite gracefully I might add! I guess I never gave much thought to it with regards to raising our children.

People ask us all the time how we do it. We don’t really ever have a good answer. It is life – our life – that we chose – we just do it. We don’t really know anything different. I can see, though (hindsight is always 20/20), that it HAS changed our marriage. I can’t say that it has damaged it, ruined it, made it unhealthy or unhappy; it has just made it.........different. I realized recently that the last time Kevin and I spent any time alone together was on our flight to New Orleans on October 31, 2009, to adopt M. Yes, it is true – that was the last time! This is due in part to the needs of our children (having one hospitalized for 10 straight weeks didn’t help), in part to lack of finances, in part to being just plain too exhausted, and in part the difficulty of arranging care for a child with multiple medical needs. It’s not that I don’t trust people; it’s that people don’t get how significant M’s needs are. They look at her and see that she’s cute, she’s chubby, she smiles, she sleeps, she eats, she poops, typical baby, right? They don’t understand that she could have a shunt failure at any moment, that she could be exposed to an illness that a “healthy” child could fight off but would land her in the hospital, that pulling her arm or leg the wrong way to dress her or lift her up could pop it out of it’s socket because her joints are so loose or cause her great pain because her muscles are tight. They don’t understand that losing a couple drops of her medication could mean that she spirals into a pattern of seizures that we can’t get controlled, or that her vision impairment makes changes to her environment much scarier than for sighted children. It is exhausting to try and “prove” to others that she has significant needs; that they can’t “blow off” what I’m saying as me being an overprotective mother or a worry wart.

It is not that we don’t love each other, that we don’t enjoy each other’s company, it’s just that “we” has taken on a whole new meaning. I don’t really like to use the word “sacrifice”. That insinuates that I feel we’re missing out on something and I really don’t feel that way. We don’t vacation, we don’t eat out, we don’t buy new clothes, we don’t drive new cars and I’m okay with all of that. I don’t need any of those things. What I NEED is for my family to be happy and as healthy as possible. M’s new medication has really brought her out of herself. She interacts, is smiling and is laughing. Those moments make the hours I spend on the phone fighting for coverage for equipment and medications all worthwhile. Just last night I said to Kevin, “I honestly don’t care how things end up as long as she is able to find happiness in her own way.” That doesn’t mean I’m going to stop fighting for her or looking for treatments to improve her life and health. It just means that there is nothing more important than happiness and joy.

I realize that goes for me and Kevin, too. Without our health, happiness and mental stability, we are not going to be able to continue to give 100% to our family. We are obviously still struggling a bit to find the balance. That said, we are….get this….going on a date!! Yup – I made the decision last week that one night out alone together would be a very good investment. I can’t give you any details because it’s a surprise for my darling husband, but I have no doubt it will be a great evening!

Thursday, July 1, 2010

Under normal circum-stances I am NOT one to count my proverbial chickens... you know how it goes. I will admit, I am one who traditionally worries about the 'what ifs'. That said, today was a VERY GOOD DAY! We deserve to celebrate it! For the last two days, her clusters of spasms have been better. She is still having them, but they are nearly undetectable - to the untrained eye, that is. She has been...get this...awake, alert, SMILING, squealing and today, in like five minutes time, she learned how to eat! Yup - you heard it folks - she is EATING FOOD before her first birthday!! (No, she is not feeding herself, but likes to play with the spoon while she eats). She is also sitting up in this chair with only the aid of a seat belt, tray and a couple towel rolls. THAT is amazing in itself!!

We had an awesome eval with an actual, real live rehabilitation physician who was incredible! She is getting us hooked up with absolutely everything we could ever need. For starters, M is sporting a "Johnny Cool" (yes, that IS it's real name) thumb splint - VERY stylish. Amazingly, her little hand is open and relaxed, not clutched into a tight, painful, little ball. The clonus in her left leg is a little worse and she is now showing it in her right leg as well. Previously her entire right side appeared unaffected. For now, because of her small size, we're holding off on braces, but they will most likely come down the road. We are going to up her stretching and PT to try and keep her a little looser.

To top it all off, she has been sleeping - ALL NIGHT LONG!!!!

I know to the mom with an "average" child, these things seem trivial, but to me - they are incredible miracles!!

We're praying we continue to see improvement or at least stability for a while.

About Me

I am a happy wife and lucky mom to four very special kids. If there's one thing I've learned over the past few years it's that life never goes as planned - and that's okay by me! feel free to email us: ksfenske@gmail.com

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For six long years we've held her tightly in our hearts. Leaving her behind in her orphanage was the hardest thing we ever had to do. We've fought like hell to be allowed to bring her home & promised her that we'd never give up.

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Some luck lies in not getting what you thought you wanted but getting what you have which once you have got it you may be smart enought to see it is what you would have wanted had you known..... ~Garrison Keillor